How I Survived Toxic Mold

“How I Survived Toxic Mold” is a project designed to present in one place brief summaries of many people’s experiences with toxic mold. The goal is to demonstrate the scope of the problem of toxic mold illness; to give sufferers more ideas about how to cope; and possibly to encourage the media to consider similar coverage.

Here are a few more pieces of information about the project. Some sample essays follow.

* All essays need to be 150 words. (If essays are more than 150 words, we will need to trim them down and then get your approval before publishing.)

* All stories about “How I Survived Toxic Mold” are welcome regardless of what stage you are at in the recovery process and regardess what measures you have or haven’t taken to survive. Also, contributions are welcome regardless of whether toxic mold seems to be the main issue for you or just a piece of the puzzle.

* You can use either your real name or a pseudonym.

* A photo suggestion or submission of a photo relevant to your story would be helpful for inclusion. This could be a photo of a location, a building, an object, a person, a pet or anything else. A link to a You Tube video also would be appropriate.

* If you choose, you may include wih your name a link to a website, blog, Facebook page or other source of information (or an email address).

* We are willing to help you summarize your experiences into a 150-word essay upon request.

* The goal is to collect as many stories as possible. If you know other people who might be interested in participating, please let them know about this project!

Thanks much to all for helping to draw attention to this important health issue.

Sincerely,

Andrea Fabry & Lisa Petrison

NOTE: Additional stories of people who have shared their experiences publicly are listed on the Mold Stories page of this website.

Betsy Anderson

I fled. We had sudden, extreme exposure when our landlord tore up floorboards releasing a toxic mess from the crawlspace and spread it through the house with a fan. Fled to a tent in the yard within days, then fled to hotels. Searched for a year for a safe place for my family. Ultimately, fled not only house and all belongings, but the country (England) for a drier climate.

I still flee. I feel good when not around mold or other toxins, but can be immediately incapacitated when exposed. I’m reactive enough that I have to flee. It is a very rare house that I can tolerate. I eat healthfully, detox, live clean, research a lot, have learned a lot. Every aspect of life is now different. It is like being an alien on a planet I am nearly suited for. But, really not.

Kelly Batic

Our family of six lost our home to toxic mold. While in the home, we lost a baby to miscarriage and had a two-year-old with asthma who was in and out of the hospital every two weeks. Other symptoms included brain fog, yeast infections and frequent colds.

We tested our home and found four different toxic molds. The sewer was backing up and flooding. We were unaware of the mold and bacteria growing.

We fled our home like it was on fire. We took nothing with us. With the support of family and friends, we began recovery. In the spring we went to a mold specialist and began detoxing. We have been detoxing, avoiding and recovering for four years and are getting better daily.

We hope to continue helping others learn from our experience and supporting them as they detox.

Janis Bell, Ph.D., N.M.D., R.Y.T.

When I was 13, my family moved into a house with a basement that flooded regularly. I developed endocrine and immune symptoms.

At age 32, I moved to a town where mold was ubiquitous. My office was in a sealed building that allowed the toxins from animal cages and molds in the basement to spread through the central HVAC. I watched my health decline despite visits to many doctors and was disabled at age 44 with the diagnosis of ME/CFS.

After over 20 years, a new doctor identified mold as one of the contributing factors, and this was confirmed by a high ERMI in my house. Clean-up made me so much worse that I became reactive to everything. So I left home to start camping, thanks to the advice of Karen Dean and Jill Neimark. I greatly improved but, unfortunately, am still camping due to persistent hypersensitivities.

Sandra Calero

I am an environmental engineer. I never had any problem with normal mold even though I worked in a sewage sludge treatment plant.

I live in Colombia in South America. I went to Miami in December 2012 to try to get a scholarship to start a master’s degree.

A pipe broke leading to the rapid proliferation of toxic mold. I slept in the room right next to it.

Then I got this “weird flu” that caused burning in my chest, shortness of breath, terrible leg cramps, insomnia and more. It was a complete nightmare. I realized it was “that mold” and searched for answers desperately. Mold/toxin avoidance saved me.

My life has completely changed. Now I’m very hypersensitive to many molds and chemicals. I took cholestyramine and avoid the triggers. I am struggling.

But I feel gratitude for what I still have and believe I will win this battle.

T. Campbell, Ph.D.

Shortly after being diagnosed with ME/CFS in 2007, I read several posts on message boards about people improving with mold avoidance. I thought they were crazy and desperate.

I thought my symptoms could be addressed by treating infections, addressing POTS and pacing for PEM.

I was bedbound with severe POTS and OI. Moving out of a moldy environment hadn’t changed my functioning. It had, in fact, made me worse, or so I thought. I hadn’t considered the fact that I had ended up in another moldy apartment.

Eventually I ended up in a house that didn’t have toxic mold. I had some improvement to mostly housebound.

I then moved away from an area with bad outdoor air to another house without toxic mold. I had dramatic improvement. I went from bedbound to housebound only 25-35% of the time. My PEM was reduced by about 85%. My POTS symptoms were reduced by 80%.

Kelly Connor

After 10 years of CFS/CFIDS, I began to remember mold exposures from the time before I got suddenly and increasingly ill in middle age. I realized that I had been having a Stachybotrys toxin reaction. I began to remember mold in various former dwellings. I began to get rid of possessions from those times. Gradually, I gave away treasured books, plants, rugs, clothes and papers. I still have some artwork in plastic, old photos and paperwork. These must be disposed of as well.

As my environment cleared, my awareness of new Stachybotrys toxin exposures increased. If I shower and change clothes, I can often recover very fast.

There are other exposures which remain problematic, but I don’t know which toxins cause them nor how to recover. I still have Lyme disease complex from mostly untreated Lyme and co-infections, but avoiding mold has made it much less debilitating.

Our family of 11 moved into our dream home in June 2000. Symptoms started immediately. It took a botched mold remediation to make the connection between our illnesses and the home. We vacated in October 2008. We left everything behind.

Within a few months it became clear that it would take more than leaving the home to resotre our family’s health. We fled to the dry climate of Arizona and began the process of rebuilding our weary immune systems.

We radically altered our lifestyle. We got rid of all chemicals in the home. We completely changed our diet. We took out all grains, sugar and even fruit for a time. We ate thick bone broth soups and lots of green juices. We did colonics and acupuncture. We also continued to practice strong mold avoidance.

While lingering issues remain, our kids are now able to attend school, work, and participate in life again.

Grateful Grandmother

I bob and weave.

In 2008 I realized our home of 32 years was full of hidden toxic mold. I was too. My husband wasn’t. The more I tried to save our home, the more ill I became, and our marriage as well.

We moved to a hotel for six weeks and remediated the entire house, but not me. The house was clean, tested by the best. We disclosed everything, threw away everything, and sold the house.

In a rental, I researched and strived to get better, which I’m still doing, thanks to mold doctors and wonderful people on the net. In 2012 we found “home.” Then I chose to bob and weave, try to avoid, work on my health, and keep it more to myself.

I chose marriage and family. On a blanket, in a park, the best medicine of all is watching my grandsons play baseball, and I feel good.

Jessica Grow

I visited a homeopathic doctor just as I was beginning to feel ill. Within 30 minutes of interviewing me, she said, “I believe you have biotoxin illness.”

Later the blood tests would confirm her diagnosis. I had become bedridden from extreme fatigue, nausea, memory loss, severe depression, body acne and painful joints.

I started Dr. Shoemaker’s protocol and was not getting better. Both my house and office mold tests were good. I thought, “It must be my home or office that is still bothering me,” and so I decided to isolate myself to only those two places.

Within three weeks, I began to feel really good. After two months, I almost felt normal again and my blood work significantly improved.

By avoiding mold I continue to feel well. I never would have thought that small exposures to mold while shopping could affect me so badly.

In 1986, Dr. Paul Cheney asked me, “How would you like to become a prototype for a new syndrome?”

I refused, saying that my improvements due to staying out of moldy buildings would distract from his theory that our illness was caused by a virus.

But Dr. Cheney insisted. So I became a participant in the study group that led the CDC in 1988 to recognize the illness that they named “The Chronic Fatigue Syndrome.”

Later, adapting the biohazard protocols that I had learned in the Army, I created a strategy of “Extreme Mold Avoidance” to prevent even tiny amounts of cross-contamination from permeating my safe zone.

And that’s when I started climbing mountains.

After Ritchie Shoemaker heard my story, I was profiled in his books Mold Warriors and Surviving Mold.

While not a cure, this is more effective than any remedy that I have ever seen….and deserves research.

Beatrice Latherings

I survived because of two people on the Internet, plus the support of friends and family.

The first Internet person nailed my problem as mold and persisted in convincing me. I thought I had Lyme and had never heard of mold illness.

The second person recognized that I was a severe reactor and started strongly encouraging me to get out of exposure. After a series of housing disasters, this same person suggested I buy a Camplite travel trailer. It was moving into that trailer, which was and is mold-free, that saved my life.

I took cholestyramine for two years but medical treatment has not made much difference. It is Extreme Avoidance (living totally free of mold exposure and staying out of water damaged buildings) that has allowed me to return to functionality. The best situation was spending six months at 8000 feet, living in the Camplite, in pristine air.

There wasn’t any connection that I could see between mould and my debilitating ME (CFS), acquired after graduation from the University of Cambridge in England. Rest and various treatments (chiropractic, diet, supplements, etc.) had helped somewhat. I lived near the sea in Felixstowe, long renowned for its fresh air.

I made some videos, then Erik Johnson commented that some people with ME don’t experience those awful “crash” symptoms after everything they do, if they are really free of mould. So I started looking into that.

Now after any exposure to mouldy environments, I immediately bathe and wash my clothes. In my current house, there has never been any mould. My health has improved a lot more.

Although I cannot pinpoint how my illness started, whenever I now “crash,” I can see that it is almost always triggered not by overdoing it, stress or a virus — but after I haven’t “avoided mould.”

Tearing apart moldy kitchens and bathrooms was just another day at work.

My health declined over decades. Eventually, I completely broke in part because of being steeped in mold spewing from our new front-loading washing machine.

Conventional medicine had no answers. I spent two years thinking I was going crazy while researching on my own for 40-60 hours a week. Finally, I figured it out and took myself and my brother to see Dr. Ritchie Shoemaker. We both have a pair of the “dreaded” genes.

Today I’m 60-70% recovered. I’d be even better but it has taken time to wade through thousands of dollars of contradictory mold testing before finally finding a hidden mold source – finished basement walls.

Taking cholestyramine, anti-inflammatory supplements, killing MARCoNS, and following an anti-mold diet have helped immensely along with practicing mold avoidance and sleeping in a super clean bedroom.

I became ill with Myalgic Encephalomyelitis (aka Chronic Fatigue Syndrome) in 1994. By 2007, I was near comatose all the time with dozens of symptoms. Finally I learned about toxic mold and did a trial away from the house with different stuff. After that, I reacted violently to both the house and its contents. The house did have black mold hidden in it.

I improved after moving to a Chicago apartment with new things, being careful to avoid moldy buildings. I felt even better when camping in pristine places out west. Now I am living indoors in New Mexico, feeling basically recovered.

My son went from normal kid to disabled kid in about six weeks. Starting when he was 11 and for about nine months, he was having trouble walking, playing, eating, drinking and sleeping. He was in terrible pain and couldn’t go to school.

Our whole family was sick. Finally I read the book Surviving Mold. An ERMI test on the house came back high in toxic molds.

We left our home. We took a few clothes to the laundromat and washed them with 1-2 cups of ammonia. We lived between motels and tents for 10.5 months. My son started improving within four days. We knew we could not go back to that house until it was fixed.

We threw out most of our belongings and put the rest in storage. We remediated the house and we retest often to make sure that we don’t ever get that sick again.

Nikki Sharp

Our family of five started getting sick in 2008. We finally discovered toxic mold in 2012. The entire back end of our house had to be remediated. But I didn’t figure out that the illnesses and mold went hand in hand until the end of 2013.

Our children suffered the most from food allergies and chemical sensitivities, with our youngest needing a gastronomy tube as he had given up eating. Everything made him ill.

After starting cholestyramine in the kids, there has been much improvement. The chemical sensitivities are much better and we have added some food back in. We must, however, continue to live “green and clean.” We cannot have any food additives and I don’t allow chemicals of any kind in our home.

We still have much to recover of our health (and finances!), but for now, avoidance of toxic substances is key.

Ryan Shellenberger

We built our home in 2003. We wanted to grow old and die there. The house tried to speed up the process.

During construction, roofers cut corners. As a result, water slowly leaked into the ceiling and walls. We never saw it, but there was enough to start mold and bacteria growth. By the time we learned of the problem, our family had paid the price.

We vacated our house and everything in it and lived in multple locations in the course of a year. We were in and out of hotels. During that time we remediated and then sold our dream home. We built a new home, with our eyes open this time, and reside there now.

Everything is not better by any means, but we know we did what we had to do for the sake of ourselves and our four children. I only wish we had figured it out sooner.

Kristina Townsend

I was exposed to high levels of toxic mold while in the Virgin Islands in 2007. I was there for my job and was housed in a building that had been condemned two years earlier.

The key to my survival was the testing offered by Real Time Labs. The testing confirmed a diagnosis of mycotoxicosis, which helped me understand the nature of my illness. It also helped me address the real issue and get the medical help I needed.

Even with proper medical care, I realized my need to radically change my environment and diet. I practiced extreme mold and chemical avoidance.

Through ongoing detox processes, antifungal treatments and other medical options, I have been able to achieve 90 percent recovery. I continue to heal by practicing avoidance and will continue to do so, because I understand the harmful nature of mold and chemical toxins.

Having lived a healthy life abroad for many years, I returned home to Australia and began a new elementary teaching position in a water-damaged room—a tiny, windowless classroom underneath a flat roof that was crowned with a small brick fence; an open invitation for mold.

The room and air conditioner were rancid with mold and the adjoining covered playground reeked of possum urine.

Within the first few months I began to notice mounting symptoms; I thought I was just experiencing stress and aging.

However, four years later all my systems had crashed and fifty symptoms and several illnesses activated and overwhelmed my body, mind, and spirit.

I have practiced lots of yoga and mindfulness and used gentle detoxing methods: HBOT, infrared sauna, and Andy Cutler Protocol. I try to eat unprocessed food according to my biochemistry, and I take probiotics specific to my gut flora.

Links on this page are in orange (no underlining).

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Paradigm Change provides a variety of information on the role of environmental microbial toxins in chronic multsymptom illnesses (including ME/CFS, fibromyalgia, chronic/post Lyme, MCS/EI, POTS, MCAS, Alzheimer’s, autism and other similar conditions).

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